EXPERIENCING POSITIVE ASPECTS IN BEING A SPOUSAL CAREGIVER IN PARKINSON’S AND ALZHEIMER’S DISEASE

Abstract

Aim: A primary aim of this study was to describe caregiver appraisal and coping strategies in caregivers of family members with Parkinson’s (PD) or Alzheimer’s disease (AD). This study was part of a larger randomized clinical trial of a skill building intervention for caregivers. Method: To achieve this aim, 84 spousal caregivers who were consecutively enrolled in the study were interviewed at baseline. The interview focused on specific caregiving situations where the caregiver was asked to describe a positive or meaningful caregiving event. Interviews were semi-structured and included probes to elicit the full narrative of the events. Interviews were transcribed verbatim and analyzed by the research team utilizing a thematic analysis. Results: Of the 84 caregivers, 48% (N=44) were PD caregivers and 52% (N=40) were AD caregivers. Male caregivers comprised 17% (N=14) of the sample. The mean age of the caregivers was 63.7 years (SD ±26.8) with the mean age of their spouses being 75.5 years (SD ± 7.2). The core theme identified was “time spent together”. Within this core theme were several relational sub-themes including turning back the hands of time, being able to rely on the caregiver, and experiencing moments of joy when the family member can participate. Conclusions: Differences existed in both how easily caregivers could identify positive or meaningful aspects to caregiving and how many aspects they could identify. However, the majority of caregivers were able to identify a positive or a meaningful aspect to spousal caregiving. Future intervention studies with spousal caregivers might consider developing targeted interventions based on positive meaningful caregiving situations and building on this relational aspect.